For Everything There is a Season

"In order to write about life, first you must live it." ~ Ernest Hemingway

Page 39 of 44

The Prednisone Wall

“Obstacles don’t have to stop you. If you run into a wall, don’t turn around and give up. Figure out how to climb it, go through it, or work around it.”

~ Michael Jordan

I am staring up a giant wall that I like to call the prednisone wall. For any of you who may not be familiar with prednisone, let me elaborate. It is a medication called a steroid used to treat a variety of medical disorders including asthma, arthritis, inflammatory bowel disease; basically any type of disease that involves inflammation. It is a blessing and it is a curse. It can save your life and when not used properly, it can kill you. Prednisone is one of the least expensive medications I can get my hands on, but it comes with quite a scary list of risks and side effects, including but not limited to: diabetes, depression, insomnia, memory loss, ulcers, bones loss, cataracts, life-threatening infections, the list goes on and on. You know how when you get your prescription filled at the pharmacy and it comes with the medication fact sheet listing all the possible side effects? Yeah, well the problem with prednisone is that if you are on it long enough or often enough, you WILL get those nasty long term complications they warn you about. Guaranteed.

I have been on and off prednisone at least ten times in the past two and a half years for an autoimmune disorder. Sometimes it has a course of five days but more often than not, the course has run at least four to six weeks; sometimes even months. I have never in my life had the type of love-hate relationship with anyone or anything that I do with this medication. It has helped relieve joint pain that was so severe that I wished I was dead. It has helped me to breathe. It has relieved inflammation in my sinuses and in my stomach, allowing me to eat normally again. It has been my lifesaver.

It has also been my curse. I have been on it enough times now that I am better prepared for what will probably come in terms of side effects; although every time does seem to be a little different depending on the dose and how long I am on it. Until four days ago, I was off it for six whole months; a record for me. However my rheumatologist and I agreed that it was time to go back on it due to the possibility that I have autoimmune induced hearing loss and the need to try and prevent further complications until I am evaluated by an ear specialist. It was also time to try and settle down some other symptoms that just were not getting better on their own.

So, today is day four. Although the insomnia has not been a major issue this time around, the hunger and food cravings were in full force over the weekend. If you’ve never experienced prednisone, you don’t know what you’re missing. You eat a full meal and thirty minutes later you are starving. All you want is sugar, refined carbohydrates, anything bad for you. No exaggeration, I could eat a full meal every two hours and still be hungry. I could sit down for dinner and eat a whole large pizza by myself. And half a loaf of garlic bread. And a plate of brownies. I would still be hungry in two hours after this elaborate feast. Food is all I can think about when I first start prednisone. I made the decision before I took that first pill four days ago that I was just going to do the best I could the first 48-72 hours. If I was hungry, I was going to eat all the calories I was hungry for while trying to keep it somewhat healthy (that kind of worked…a little). Usually after that period, the hunger and cravings settle down. I was going to cut myself some slack and that I did. I got as much exercise as I could as well.

The prednisone wall also makes me jumpy and restless; another issue that usually settles down within 72 hours. The slightest amount of stress can set me off and I feel like I just want to jump out of my skin. It used to get so bad, that I would have to take anti-anxiety medication for it…or drink lots of alcohol…or both. But I can’t do that now. I have worked too hard to get myself healthy to be throwing all that junk in my body! So instead, I am resorting to every self-care and anxiety relieving technique I have ever learned. Surprising result: they work. The trick is to listen to your body, know when you need to step back and rebalance. Then figure out what works. For me, it usually means time alone at home, with low lights, candles going, no TV or excess stimulation at all. I take a hot shower and then surround myself with things I love (and that don’t talk to me!) such as books, magazines, scented lotions, etc. It is about changing the environment.

My last hurdle to get over the prednisone wall is the crazy ass mood swings that it produces. I know this issue is not exclusive to me, but it can be a nightmare. It is also an issue that can settle down quite a bit after the first 72 hours, but then resurface the second the doctor decides to start weaning me off the medication. I am not talking the “weep a little while you watch Lifetime” mood swings. More like one minute I am having a very rational discussion with my boyfriend and the next minute, I am crying uncontrollably; for no reason. There is no rhyme or reason. It requires a lot of explaining on my part which is hard when I just want to curl up in a ball and cry. I am much more impatient and easy to anger. I can be difficult to be around which is now even harder because I am not living alone. In essence, I am not me. However I have found the best way to deal with this is to be upfront with people about the medication and keep myself out of situations that will get me into trouble, so to speak. If I am having a particularly difficult day with the crying, I just hole myself up in my house and let myself cry, instead of trying to fight it all day. Instead of struggling and feeling guilty, I stay home and take care of myself until I can get through to the other side. The other side does come.
These are all hurdles that one little tiny pill throws in front of me every time we get back together…the one that I love and I hate so much. I have discovered a lot about the ways I can climb the prednisone wall instead of giving up and just letting the medication control me. Hopefully this will be one step closer to ending the love-hate relationship I have with prednisone and the beginning of a more peaceful coexistence.

Author’s Note: Please feel free to share your good and bad prednisone experiences below!

Photo Courtesy of Google Images

Running A Race I Cannot Win

From the bitterness of disease man learns the sweetness of health. ~ Catalan Proverb

Most of the time I feel like I am running a race, maybe even more like a marathon. There are hills and conditions working against me. There are people cheering me on. I am not running to win; I am just running to cross the line and finish. The problem with this race though is that there is no finish line. This race never ends.

I was driving back from an appointment with my rheumatologist today and these are the thoughts that came to me. After three exhausting hours at the medical center where my doctor is located, I was just beat. I have this autoimmune disease called Sjogren’s Syndrome (well they are pretty sure I do anyways) and just when I think I am winning the race to get better, I get pushed back to the previous mile marker. I guess it could be worse though, I am just grateful that it’s not back to the starting line.

As far as doctors go, this new one is pretty top notch in my book. There are issues with communication amongst her office staff and her, but trust me, there are more stressful things to deal with than that when it comes to doctors. I was doing pretty well physically there for a while, considering that about two years ago, I was having a difficult time even getting myself into the shower. But I get so frustrated when I do better for a while and then I approach the hill again in the race. It is even harder when the hill is one I have not climbed before.
I think I have adapted so well to the race that I sometimes downplay when I am struggling. I don’t want to admit that maybe things aren’t quite as good as I would like. Once the doctor and I got talking today, it was clear that things are hitting a curve in the road. My asthma is flaring up from the extreme heat here in New England. I have had issues with sun sensitivity and rashes. Joint pain, although well controlled during the day, wakes me up sometimes during the night. Sores in my nose from extreme dryness. And the big granddaddy of them all, a significant hearing loss which is not getting better. Maybe autoimmune related, maybe not. I have gotten the impression from this doctor that she does not get excited too easily and she seemed concerned enough to want to get my hearing evaluated right away. Then, I left the office with a prescription for steroids (again), labs, and an x-ray.

I know that so many people have obstacles much bigger than I do in their race. I am very well aware of the progress I have made in my daily functioning and health over the past few years but the bottom line is: I don’t want to be in this race anymore. I don’t think that too often because I have had a numerous amount of blessings come from this illness. For just a day though, I want to remember what it’s like to jump right out of bed and start my day without pain. I want to be able to go to a job. I want to not have to cancel plans when I am sick. I want to go sky diving and zip lining. I want to be well enough to care for my parents when they enter their more senior years. I want to be healthy and well.

I guess the problem though is that with a chronic illness, you cannot look at it like a race because as I mentioned a few paragraphs previously, there is no finish line. It’s not like when I had cancer and I got treatments; then I was cured. There is no cure for Sjogren’s. There is not even an approved treatment for it. The best I can do is to continue to live each day as fully as I can to the best of my ability. I can keep writing. I can keep cherishing my friends and family. I can keep laughing. I can keep trying to make a difference in the world. Most importantly, instead of treating my illness as a race, I must treat it like a journey. One that I must approach gently, yet with determination, courage and laughter.

Photo courtesy of Chuck Myers

The Fury of Mother Nature

I sit here on my couch, in my home, freshly showered with clean clothes on. I have my boyfriend sitting next to me working on his computer and my dog resting quietly on her blanket. We have a roof over our heads. There is food in the refrigerator. We have electricity and running water. Except for a sunburn and very irritated eyes, I am comfortable.

That is not so for many families living in communities surrounding mine. Here in the western part of Massachusetts on Wednesday June 1, 2011, several tornadoes ripped through this part of the state leaving a pattern of devastation so rarely, if ever, seen in this little hub of New England. We just don’t get tornadoes of this magnitude in this part of the country. It is something that we hear about happening in Missouri or Kansas. Massachusetts averages two tornadoes a year and to be honest, you usually never hear about them. Most of us have only seen photos on TV of torn off tree tops and flattened homes.

I really wanted to find a way to help some of the victims from this terrible tragedy and was fortunate enough to be able to join my church to spend a day in the local town of Monson to assist a family and their neighbors with sorting through the debris of what were once their homes. We brought supplies and just as importantly brought some hope and some faith. I had lived for two years in the quiet town of Monson many years ago and therefore had a soft spot in my heart for this quiet and friendly town.

Nothing can really prepare you for the sight of the landscape you see when you approach a part of a town that has seen a tornado tear through it. The trees are gone, or at very least the tops of them. Whole buildings are collapsed. There are wires down on the street every which way you turn. National Guard personnel stand on the street corners and walk down the sidewalks. As we drove through, it seemed to me that the scene might be similar to a war zone as depicted on TV. There are claims adjusters and other official looking people going from site to site. People’s belongings are strewn all over not only their lawns, but on their neighbor’s neighbor’s lawn.

We sorted and we sifted. We made piles. We lifted, hauled, and carried. We gave hugs. We tried to console without letting the victims see our tearful eyes behind our dark sunglasses. Part of me felt like I was privy to the insides of someone’s life as I was sorting through their clothes and other personal belongings. I couldn’t help but imagine what it would be like to be so displaced; to have strangers sorting through your belongings and in less than two minutes, to have your entire existence as you know it changed forever. I don’t know personally the people that we helped today, but I knew that I just wanted to turn back the clock for them and freeze May 31, 2011 so that they never had to experience the loss and sorrow associated with June 1, 2011.

However despite all of the loss, there was so much hope. We heard several stories of survival. I was shown a small space underneath the complete collapse of a home where a woman and her 12 year old child crawled out from the basement. I saw children about 11 or 12 years old walking the streets offering food and water to the residents of the neighborhood as well as to the men and women working to help restore power lines and such. I witnessed an incredible amount of supplies being hauled into the neighborhood; people sometimes having to carry them for a mile or so because vehicle access was limited.
It’s funny because oftentimes we go about our day to day lives and get so caught up in what is NOT good in this world….the people who hurt us, scorn us, or just plain aggravate the hell out of us. But I have to tell you, there is a lot of good in this world. There is also a lot of human resiliency. When people are faced with the most adverse of circumstances, they find something deep inside themselves that they didn’t know that they had. They rise to the occasion.
I started writing this blog posting last evening as this all took place yesterday, but I had to put it away for a bit before I could finish it. Sometimes when an experience is overwhelming to me, I have to write down some initial thoughts and then come back to it. It can be because I am having a difficult time with the writing. In this instance though, I had to come back to it because the emotions of the day were so overwhelming to me yesterday. They still are, but the shock has worn off a bit. I feel like I was part of a process that was so raw on a human emotional level. There was something so deeply personal and humanistic about helping these disaster victims. People like you and me. People who, by chance, live in the path of Mother Nature’s fury. People who will face their obstacles, rebuild, and continue on.

Photos: Chuck Myers and Christine Molloy

My (Im)Perfect Body

“You’ve got your body for life, you might as well learn to get along with it.” ~ Sandy Kumskov

In my previous blog entry Turning Forty, I referred to the fact that I am not always physically comfortable in my own skin. As I was writing that sentence, I just knew that I was going to have to blog about it. Body image issues are a topic I can write extensively about and well, I haven’t. I did do an entry back in April about taking responsibility for my health, which was in reference to weight issues, but that has been it.

Truth be told, it has been difficult to consider writing about my relationship with my body until now. There has recently been a shift in my appreciation for the physical appearance of my body. At first I thought it was because I have been taking much better care of myself and it is starting to show. I am seeing muscles that have been buried my whole life. I have lost weight. That being said, I think it is more than that though. I think the bigger shift has been in the way I think about my body.

Except for maybe my hair, I usually don’t have a positive thing to say about the image staring back at me in the mirror. I have too many stretch marks (especially since I have never given birth!); WAY too much fat around my middle; arms are too flabby; too much hair in places that I shouldn’t…the list goes on and on. Why in God’s name do we do this to ourselves? I know that this is not an issue exclusive to me. How many times have we had friends or other people we know criticize their appearance, all the while we are just rolling our eyes because we think they are drop dead gorgeous? Despite the fact that God created this wonderful home for our soul, spirit, or whatever your name for it is, oftentimes all we can see is the imperfections that stare at us from the mirror.

Now though, sometimes I can look in the mirror and actually summon up a positive thought or two. I can think to myself how remarkable it is that my body is still functioning at all after the obscene amount of procedures, toxic medications, and stress it has been through. I look at my eyes and thank them for enduring years of severe dryness; some people actually have eye damage/vision loss from it and I have not. I look at my hands and in them I see the miles they have put on holding the hands of others. I appreciate the heartiness and strength of my feet which for most of my life, have endured much more weight on them then they should have. I look at my chest and I think of the miraculous work my heart has done for me despite it being broken many times, both figuratively and literally. As I give myself a once over every morning (at least once!), I try to remember the times my body has given love and received love.

It’s not an easy thing to look at one’s (im)perfect body and think of it as anything but flawed but like they say, beauty is in the eye of the beholder. For now, I am going to try and behold the beauty that is my wonderful, strong, and courageous body.

Turning Forty

 “Life begins at forty.” – W. B. Pitkin

I am going to be 40 years old tomorrow. By the time you get to 40, it seems like many people are dreading having another birthday. Not me. To start with, to have a birthday means to have made it through this world another year and be fortunate enough to be looking forward to another one. That right there is enough cause for joyful celebration. I was diagnosed with cancer nine days before my 25th birthday; that can change your perspective on the whole birthday thing quite a bit. So can getting to the other side of heart surgery, chronic autoimmune illness, and severe depression. When you are a survivor of anything, whether it be illness, death of a loved one, abuse, the list goes on and on; birthdays are an opportunity for us to celebrate ourselves and what we have endured. It is a chance to say “Yes I have gotten here”. It also is a chance to be hopeful that maybe, just maybe, the next year can help us realize some of our hopes and dreams.

I have to be honest; it really bothers me when people complain about having another birthday, whether it be their 40th or any other year. I just don’t get it. I know that my perspective about the birthday thing is not always the same view other people have. As a society, we don’t usually value getting older and a birthday is a reminder that we are in fact getting older.

Maybe we are afraid of getting sick…
Maybe we are afraid of death…
Maybe we are afraid we won’t be as useful as we once were…
Maybe we are just disappointed that we have not accomplished what we thought we would.

See, I don’t look at it like that. I have even tried to look at it like that so I can be relatively sympathetic to my friend’s complaints (I have quite a few turning 40 this year!) but the truth is: I am grateful to see that big “40” on a cake or on a card. It means I got 5484 more days than I originally planned on when I was 24 years old.

That being said, the course of my life has veered quite drastically from where I planned it to go when I was 18, 20, or even 30 years old. At this point, I was supposed to be married with 2.2 kids, a few dogs, and a house with a white picket fence. I was supposed to have some financial security as well as a fabulous nursing career. I was not supposed to spend the better part of my 20’s and 30’s dealing with so much illness, stress, and heartbreak. Ahh, the best laid plans.

So where did my life end up at 40 years of age? I’m divorced with no kids, not financially secure by any means (well heck, who is these days?), out of work for over two years, and I have complicated health issues. I also ended up with an incredible circle of friends, a loving family, a pretty cool (although oftentimes psychotic) dog, a warm home, a loving and supportive church family, a relationship with God, and a man who has redefined for me what it is to truly love.

On the way to 40, I have also ended up with a very strong sense of self. I have learned to love myself and to value the gifts I have to share in this world. I cannot say that about the former 30 year old version of myself. I have confidence. I even like who I am on most days. As I approach 40, I am learning to be more physically comfortable in my own skin. I have to say, that still remains one of my biggest challenges; maybe I will have mastered it by the time I am 50.

I have learned a lot about how to be a good friend and partner.

I have had the opportunity to work with people who have faced much greater hardships than I can ever imagine.

I have learned to treat my body with the respect that it deserves.

I have learned how to be grateful.

I have stopped living my life as a race and instead have learned to live each day like it is a privilege.

I guess it is true what they say about wisdom coming with age.

Photo: Courtesy of Chuck Myers

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